Bad Clinic Visits: It’s Not Just the Numbers

No matter how good I feel, there’s always a sense of anxiety and uncertainty when I walk into a routine CF clinic visit. Thoughts swarm my head as my name is called to walk back into the office: What if my PFTs are down? What if my blood tests come back abnormal? What if my cultures come back growing new bacteria?

This past week, I had my standard three-month clinic visit—except this time, I was less anxious. I had been able to run faster and longer than I had in previous months. My lungs felt clearer. In all, I felt healthier. I walked into my room to do my PFTs, and went through the protocol: breathe normally, breathe normally, take a deep breath, blow, blow, blow until you can’t anymore! As I waited for the technician to read out my FEV1, I was so sure that I had rocked it. In my head, I was dancing with excitement, thinking that perhaps my FEV1 was even up 10 percent.

However, when the number was read aloud, I felt my heart sink. My FEV1 had gone down 5 percent. I wasn’t convinced. I blew into the spirometer again and again, but didn’t see that increase that I was hoping for. I was devastated. All of that extra time spent going to the gym and taking care of myself didn’t pay off. In fact, I was in a worse place than I was three months before.

CF is a roller-coaster. The high points seem short-lived and the low points seem to control your thoughts. While CF has left me numb to many of the emotions surrounding my health, this one hurt. For those who do not have a chronic illness, it may be hard to understand what it’s like to have these high and lows, so it’s important to ride it out with your loved ones.

As I walked into the office, I was weary of what my doctor was going to say. I was expecting a round of antibiotics, but it was different. After a comprehensive exam, my doctor told me that she would be treating a number. There was no sign of exacerbation or infection. This left me with a complex, yet bland feeling. While I was excited that I wouldn’t be going on antibiotics, I wanted to know why my numbers were down. Perhaps my cultures would come back abnormal? But if they don’t, I have to remember that sometimes it’s just a number.

I’ll admit that I’m writing this from a place of hypocrisy, as I’m still upset, but we people with cystic fibrosis have a great ability to keep going. Those of us with chronic illnesses are among the most resilient people on the planet, and a bad number will only give more fire to our regimens, and time spent taking care of ourselves.

CF is complicated, and with that, we must not be consumed with trying to make sense of things that won’t make sense. Self-care for chronic illness is a lifelong endeavor. One bad visit shouldn’t derail all the progress we’ve made.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.